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Old 02-13-2008, 07:39 AM   #1
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New Cause of Neuropathy

I've been diagnosed with idiopathic neuropathy for years and have been given several trials of medications that didn't work. I'm not diabetic or B-12 deficient (major causes of neuropathy) though I do take B-12 injections which help my energy levels. After several years without a cause being found and pretty much at a standstill with my former neuro, I decided to make a search for a neuro who specializes in neuropathy, not just treats it.

This new neuro did a new round of tests. He did not want to see my old records. What he found is that my nerves are fine, undamaged. Previously I had been told my nerves were damaged and nothing could be done. The new neuro did a different type of MRI that showed my spine curves too far inward, I have a bulging disk, bone spurs, and severe osteoarthritis. So the nerves are being stopped in my lower spine on their way to my brain and this is what is causing all the symptoms.

Now we can proceed to help fix this and that will result in decreased symptoms. I wanted to share this because no one should just accept a diagnosis without a second opinion, especially if you've been told that there is no cause for the neuropathy. This new neuro, who does specialize in neuropathy, said that there is always a cause and you just have to find it.

I have to drive an hour each way to this new neuro but it is so worth it. It took a lot of digging and a lot of calls to find him. Now my friend's father is going to make the 5 hour drive (for him) to see this neuro because he was told the same thing about his neuropathy.

Last edited by don'tlikecold; 02-13-2008 at 07:39 AM.

 
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Old 02-13-2008, 08:19 AM   #2
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Re: New Cause of Neuropathy

I am also B 12 deficent get shots also, which barely help with my energy.
I have many other health problems, but I have been trying to get an answer about the accuracy of EMG's and no one seems to be able to help me with this.

Have you had any tests done like this?

I know the frustration of going to doctor after doctor to get answer when we know something is wrong it makes me nuts.

 
Old 02-15-2008, 09:58 AM   #3
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Re: New Cause of Neuropathy

As in all tests, EMG tests are only as good as the doctor performing them or reviewing them. I was appalled to hear the Director of Neurology Labs at my current facility say that they see many of the mistaken diagnoses by my former neuro. I asked my current neuro about this and he said it is common that they are misread. He works off the theory that neuropathy is a symptom that has an underlying cause.

I have seen many who have said their EMGs were normal but they have neuropathy symptoms. In my case, the opposite happened. My first EMG was read to say that I have nerve damage. Twice. Yet this third time, the neuro said my EMG was fine and so are my nerves. They are just not reaching my brain and that is why I have these symptoms.

I can say one thing about the EMGs. The two I had previously were uncomfortable but not too bad. This third EMG was actually painful. Of course the pain went away once the test was over but I was left with some soreness for several days and that had not happened the first two times. This leads me to believe that the first two weren't done properly in the first place. A lot would depend on the skill of the test giver.

Yes, the frustation is immense. For years, I could not get a definite answer and therefore, did not get treated as I should have been. I found more information on this board than I got my from my doctors. I also did more of my own research. I came across an article in the New England Journal of Medicine that gave me pause and it hit me like a bolt of lightening. I needed to find a neuro who specialized in neuropathy, not just treated it.

I live in a very rural area so this was not easy to do. I started looking online and making calls to the next largest city and was prepared to go even farther out. I lucked out in finding one an hour away.

I ramble on but my point is to not just accept what one doctor tells you, especially if you feel that something doesn't click. If you feel the diagnosis is wrong, the tests were not done correctly, the treatment is not working, etc, then find another doctor.

 
Old 02-15-2008, 11:14 AM   #4
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Re: New Cause of Neuropathy

I've had increasing neuropathy (used to be the bottoms of both feet, now travelling up one calf) for some years now, and what you say is most interesting. I have a scoliosis, which makes me think the neuropathy may have something to do with that. But my GP only recommends a lower back x ray. Is that good enough?

I have a great neurologist (I had a stroke some years ago), but his specialty is not neuropathy, so as you say, he only treats it.

BTW, what's an EMG?

Ta ever so,
jb
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Old 02-16-2008, 01:34 PM   #5
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Re: New Cause of Neuropathy

Quote:
Originally Posted by don'tlikecold View Post
I've been diagnosed with idiopathic neuropathy for years and have been given several trials of medications that didn't work. I'm not diabetic or B-12 deficient (major causes of neuropathy) though I do take B-12 injections which help my energy levels. After several years without a cause being found and pretty much at a standstill with my former neuro, I decided to make a search for a neuro who specializes in neuropathy, not just treats it.

This new neuro did a new round of tests. He did not want to see my old records. What he found is that my nerves are fine, undamaged. Previously I had been told my nerves were damaged and nothing could be done. The new neuro did a different type of MRI that showed my spine curves too far inward, I have a bulging disk, bone spurs, and severe osteoarthritis. So the nerves are being stopped in my lower spine on their way to my brain and this is what is causing all the symptoms.

Now we can proceed to help fix this and that will result in decreased symptoms. I wanted to share this because no one should just accept a diagnosis without a second opinion, especially if you've been told that there is no cause for the neuropathy. This new neuro, who does specialize in neuropathy, said that there is always a cause and you just have to find it.

I have to drive an hour each way to this new neuro but it is so worth it. It took a lot of digging and a lot of calls to find him. Now my friend's father is going to make the 5 hour drive (for him) to see this neuro because he was told the same thing about his neuropathy.
I couldn't agree with you more, i believe that PN should only be treated by a neuro that specializes in PN, it's a special field of neurology with over 200 known causes, only when all testing is completely exhausted should a idiopathic label be used, PN is not a disease itself, it is a symptom of something else going wrong within our system causing nerve damage, finding the cause can be a real challenge though so i believe best left to only experts in that field.

When PN first struck me my feet were on fire, i went to GP after GP all had some stupid diagnoses, know one said anything about PN, so after persisting i was eventually sent to a professor of neurology which turned out he didn't know the first thing about PN, he only done test one test, a nerve conduction test, he wrote back to my doc saying " this patient shows no signs of nerve damage , mind you i found out later that NC test can't even test for damage of small fiber nerves [ the nerves that are responsible for temperature feeling] he only tested large nerves, what a highly paid idiot.

To cut a long story short i found a neuro that did specialized in PN and he found the cause in his first lot of blood tests, these days i am nearly cured.

 
Old 02-16-2008, 03:34 PM   #6
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Re: New Cause of Neuropathy

If you don't mind my asking, what was the cause?

jb
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Old 02-16-2008, 05:30 PM   #7
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Re: New Cause of Neuropathy

Quote:
Originally Posted by jinglebts View Post
If you don't mind my asking, what was the cause?

jb
Hi jinglebts, I don't mind at all, it was a combination of elevated blood sugars [ Prediabetes ] & i was low on B12 [ always extremely tired ], the prediabetic state was picked up by a 3 hour glucose tolerance test & the b12 through a blood test, it has taken nearly 5 years to get were i am now.
regards
Aussie

 
Old 02-16-2008, 05:43 PM   #8
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Re: New Cause of Neuropathy

Quote:
Originally Posted by Aussie100 View Post
Hi jinglebts, I don't mind at all, it was a combination of elevated blood sugars [ Prediabetes ] & i was low on B12 [ always extremely tired ], the prediabetic state was picked up by a 3 hour glucose tolerance test & the b12 through a blood test, it has taken nearly 5 years to get were i am now.
regards
Aussie
Very interesting ... I'm on an anti-seizure medication (dilantin) that causes my liver to absorb less of a few vitamins that are in my blood -- esp. b12. I've been having shots at least once a week, so whenever my GP tests my blood, of course my b12 is off the charts. My naturopath and I only figured out a few weeks ago that there was this absorption problem, so I'm going to have a urine test to see just how much of anything my liver is actually absorbing ... of course, this test is not covered by OHIP (I live in Ontario Canada), so the cost is going to be $480!!!

I wonder if I'm prediabetic ...

Anyhoo, I shall investigate further ... thanks for your quick response.

jb
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Old 02-16-2008, 08:39 PM   #9
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Re: New Cause of Neuropathy

Hi again jinglebts, wow that is expensive, i was thinking that seeing your got the b12 covered might be another option to just get the other known vitamin deficentcies checked out that can cause peripheral neuropathy like, vitamin B6 deficiency, vitamin B1 deficiency, vitamin E deficiency, Folate deficiency, i think they should be covered.

Aussie

Last edited by Aussie100; 02-16-2008 at 08:39 PM.

 
Old 02-17-2008, 01:56 PM   #10
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Angry Re: New Cause of Neuropathy

Quote:
Originally Posted by Aussie100 View Post
Hi again jinglebts, wow that is expensive, i was thinking that seeing your got the b12 covered might be another option to just get the other known vitamin deficentcies checked out that can cause peripheral neuropathy like, vitamin B6 deficiency, vitamin B1 deficiency, vitamin E deficiency, Folate deficiency, i think they should be covered.

Aussie
Ah, but there's the rub: so far my B12 shots aren't covered either, altho' they could be (one MD recommended that my own GP do them, but he wouldn't b/c he feels so strongly that it's a scam -- ) . My naturopath does them to the tune of $15 a pop, which is tax deductible. Ditto folic acid.

I have an appt. with my GP next week and will shove under his face all the research that shows that dilantin blocks absorption; ditto my neuro, who should know this.

Do you live in Oz? In some ways the system is better there in the sense that many more of the complementary treatments are accepted there. (My cousin lives there, on a camel farm!) In Canada, complementary treatments are becoming increasingly accepted but they are not covered b/c they are performed by a naturopath, who has just as much training as a GP ... You have given me an idea, however; I'll approach my GP or neuro to see if I can have this test done on OHIP because of the new info that I have.

I'm tired of everything being such a struggle. For 20 years, I had a lovely GP whom I could absolutely trust and who would have give me these shots in a heartbeat; unfortunately, she retired. She used to advocate for me (not that I needed it then, but you know what I mean -- now that I do need it [advocacy], it's bloody hard to find).

Thanks ...
jb
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Old 02-17-2008, 08:46 PM   #11
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Re: New Cause of Neuropathy

Seeing i was not absorbing B12 properly through food, i cover all possible vitamin B's deficiencies now, by taking a good quality multi B with food every morning and i also take daily 1mg of B12 Methylcobalamin in supplement form on a empty stomache for better absorbtion i believe, in what research i have done they say that b12 also needs the other B's to make it work the best, they say that methylcobalamin is already in the active form and doesn't have to be processed by the liver, like B12 Cynocobalamin does.
I still get shots of B12 Hydroxocobalamin every now and again, but i am taking no chances these days, good luck with your docs anyway.
regards
Aussie

 
Old 02-18-2008, 01:04 AM   #12
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Re: New Cause of Neuropathy

Quote:
Originally Posted by Aussie100 View Post
Seeing i was not absorbing B12 properly through food, i cover all possible vitamin B's deficiencies now, by taking a good quality multi B with food every morning and i also take daily 1mg of B12 Methylcobalamin in supplement form on a empty stomache for better absorbtion i believe, in what research i have done they say that b12 also needs the other B's to make it work the best, they say that methylcobalamin is already in the active form and doesn't have to be processed by the liver, like B12 Cynocobalamin does.
I still get shots of B12 Hydroxocobalamin every now and again, but i am taking no chances these days, good luck with your docs anyway.
regards
Aussie
I didn't know there were different types of b12 so i'll check with my naturopath on that ... you're quite the gold mine of information, you are ... i'll keep you informed!

ta very much,
jb
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Old 02-22-2008, 08:11 PM   #13
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Re: New Cause of Neuropathy

I decided to jump back in after reading Aussie's posts. I first read about the link of sugar to neuropathy here on this board. Of course, diabetic neuropathy is well-known but many are also pre-diabetic. So a glucose tolerance test should always be done.

But even those without elevated glucose levels can benefit by eliminating as much sugar from the diet as possible. You can see a decrease in the pain with this. And then once you have changed your diet and then decide to eat say, a piece of cake, you will see a sharp increase in your pain within a few hours.

One poster said that he has been controlling his pain with diet and though it took some time, his pain levels were very manageable without medication.

 
Old 03-01-2008, 04:39 PM   #14
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Re: New Cause of Neuropathy

Many mistakes can be made! I have pernicious anemia since 1996, it took three drs including a oncologist and many different tests done by same Drs before I was diagnosed. I was first diagnosed with MS because of the lesions on the brain and symptoms are similar. Then a year down the road I started having other less similar to MS and so they ran bone marrow, spinal tap and another MRI and Cat Scan to confirm the Pernicious anemia. My one Neuro basically diagnosed me while talking to me, I couldn't even subtract 99 from 100 (I do accounting in my job)I had to work it out on paper. I also got my pronouns and nouns mixed up in usuage and it all was affecting my job. I initially went to the Drs because of constant neck pain. I do have reverse lordosis in the upper spine and facet joint disease, bulging discs in the neck anyway! The final diagnosis was so long in coming that I have irreversible nerve damage. I had injections 4 times a week for the first 2 yrs because the b12 level wouldn't go above 400 and my energy level never improved for a couple more years. Now after all these years I inject myself once a week, take a blood test every 3 months to check level as I lose b12 fast if I go two weeks without a shot. After 12 yrs of injections I'm as good as I'll get. No longer work anyway as I lost my job over that and carpal tunnel which was in realty the neuropathy. So it pays to get second and even third opinions and get test done at more than one lab like they did with me, it takes a while but at least you may end up with a correct diagnosis. With people like me who have multiple medical conditions with similarity several opinions are a must.

 
Old 05-04-2008, 08:40 PM   #15
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Re: New Cause of Neuropathy

Hi, "Don't Like Cold,"

Can you share the name of the neurologist in GA that you recommend?

Thanks!

 
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